Sunday, March 31, 2013

SISTER CHANTELLEYou don't have to say another word, you just listen to me.

PETERSometimes it seems-

SISTER CHANTELLEYou don't have to say another word, just listen to me!When God sits on his mighty throneAnd says 'what shall I make today?'He don't grab a drawing boardThere's ain't no mistakes, the man don't playHe simply opens up his heartOut come tumbling works of artGod don't make no trash

PETERThat's nice of you to say, but I-

SISTER CHANTELLECome on, baby, shut up.God don't make the same, y'seeOr everyone would look like mePeople need to start to thinkIt ain't a rainbow without the pinkStupid folk play in judge and juryThey're the one that's gonna know God's furyCause God don't make no trash

PETERI'm gonna be late, so-

SISTER CHANTELLEBoy you better believe itThat God is on your sideHe'll be your strength, your rock, your truthYour everlasting guideBoy you better believe itSome folks will act the foolSo caught up with hateThat they forget the golden ruleBoy you better believe itYou're who you need to be'Cause love is love, love is truth, love is GodAnd love will set you freePeople point a fingerYou feel free to point it backTwo folks want to fall in loveWith no one hurt, what's wrong with that?God is love all the timeSearch your heart and I think you'll findGod don't make no trashAnd if you're wondering why I'm a fanIt's 'cause there's a black woman inside the soul of every gay manGod don't make no,God don't make no,God don't make no trash!

PETEREverything is just so confusing.

SISTER CHANTELLEPeter...Nobody has all the answersRemember the message wellIf you hide from yourselfBe someone else for someone else's sakeThat would be the greatest mistake

Now say goodbye.

And Peter, remember

God's got your back

And so do I

Joe and I saw Bare, the play this song comes from, a couple of years ago when it was being performed over at Hart House Theatre at the UofT. We enjoyed the performance, but this song really stuck out for me, it reached a very deep place inside. It was a song I needed to hear. I play it every now and then, even though this isn't my kind of music, because it still speaks to me..

We've been told, us gay folk, for so long that we aren't part of God's family, not part of God's plan. We've been told that our lives are worthless, our love is sinful and our souls unredeemable. We've be assailed by billboard reading 'Kill a Queer for Christ' and placards proclaiming 'God Hates Fags.'

Most people I know don't understand why I believe in a God that doesn't believe in me. It's hard for me to explain. But as a young boy I found faith, I found comfort and I found a very deep love. Those things are experienced in the silences of my life - when the silence is broken by voices that tell me that who I am represents a threat to all that's good, I retreat to silence. I retreat to the question, 'Are you still there?'

And so far ... the answer has always been 'yes.'

So I share this song with others who need to know that God Don't Make No Trash. It's as wonderful to hear as it is hard to believe. But my faith begins with silent affirmation, and I pray, that's where it will end.

Saturday, March 30, 2013

On Facebook, where I admit I enjoy spending some time, I regularly see posts and posters, graphics and cartoons, messages and thoughts all regaling me to:

be true to the inner me

unleash my real voice

be authentically who I am

Every time I see one of these I kind of shudder. I mean what do you do when the 'inner you' isn't particularly nice, what if unleashing my real voice would be tremendously hurtful to others, what if I'm authentically a bit of a shit.

I spend time trying desperately hard to be the 'me' that I want to be and I try to spend less time being the me that I actually, kinda, am.

At my core there's a bit of nastiness, let me list some of the things your likely to find growing in that inner garden ... oh there's a hedge full of envy over there ... there's a grove of spite ... there are lovely stepping stones of denial that will get you through the pond of malice. Let's not talk about what hides in the shadow of the tree of resentment - no let's not.

So, despite all the encouragements otherwise, I'm going to continue to present the well weeded me to the world. I hope that over time other things take root. I have noticed that there are some surprisingly strong saplings that just might grow into a copse of patience. And, over there, I hope I see the beginnings of a bed of graciousness. I hope there is even a part of the garden that it's safe for others to visit.

But please ... don't go too deeply in.

So, exhort me all you want.

I'm not giving in to the inner me, I'm not fuelling the real voice, and until I'm authentically who I authentically want to be ... I'm not loosing the real, authentic Dave on anyone.

Friday, March 29, 2013

This morning it was cold on the bus. As is my habit, when I get on the bus, I take my gloves off and tuck them under the seat belt strap. I then am free to use my hands to check emails, send texts and play word mole. I was picked up at 6:30, it was dark out, every time the door opened winter climbed on board.

I arrived at work, the last to be dropped off. The door opened and I got my hat on and took my gloves from where they had been tucked, and slipped them on.

They were warm.

Really warm.

My hands were enveloped in a blissful heat.

Without knowing, without intention, warmth filled the gloves.

I thought to myself, as I got off the bus, that I hope that I warm those I meet I meet ... without knowing, without intention.

It is my belief ... that some of the best lessons one is given ... can be lost in the not noticing.

Thursday, March 28, 2013

Ruby was walking beside me holding my hand. We were on our way to the subway, she loves the subway, last Saturday and were chatting. Ever since she was little she has enjoyed me telling her 'Ruby stories' of things that had happened or that we'd all done together. Belinda and Susan may remember watching me tell a Ruby story, while holding Ruby, during their visit to us up at the hotel in Gravenhurst - they can attest to the fact that Rubes gets totally lost in the story. Well, she's older now, 6, and she still likes the stories. The 'dinosaur poo' story is one of her least favourite favourites. As we travelled north, after the two girls had raced to push the button to call the elevator and then the push the button inside the elevator, I thought I'd tell her a story about sharing. I asked her if she wanted to hear a new Ruby story, one I hadn't told her before. She eagerly agreed.

I told her about one Christmas when we were all together, her Mom and Dad and sister and brother. Joe and I had picked up a pair of beautiful cowgirl boots at a store in Manchester's Trafford Centre. We'd carted it all over England looking forward to giving it to her at Christmas. Well, the gifts were all opened and there was one left, the cowgirl boots. She opened them and saw them and actually gasped! She hugged them before trying them on and finding that they were too small. She looked at them, hugged them again, and walked over and gave them to Sadie saying that they would fit her little sister and that she thought that Sadie would love them too. She was as collected as she could have been - and she went on to have a wonderful fun time, all of us together.

When I finished the story, I told her how proud I was of her that day, she was so kind and so generous to her sister. That's the way sisters should treat sisters.

Once I was done she said, "I know what you are doing."

I was caught.CAUGHT!!

She then said, I want to tell YOU a Ruby story. I eagerly agreed. Then she told me a long story involving a laundry basket, a swinging door, her toenail accidentally being ripped off and blood, lots and lots of blood. She told the story like a practised story teller. She modulated her voice, she had dramatic pauses, she was working to bring the story alive. Without wanting to seem immodest, I'm pretty good at telling a story, I'd told her a lot of stories, she was working to really TELL the story the way I tell a story. It was awesome to listen to. Ruby telling me her first purposeful Ruby story.

"Wow," I said.

"That's a good story," she said, "there's blood in it."

Passersby must have wondered what was going on seeing a big old man and a tiny little girl laughing wildly while crossing the intersection.

So there you are folks, finally, a blog with blood in it! Some of you must have been waiting.

So I went to have a blood test, only routine, yesterday. I dread these tests because I'm what's called in medical parlance "a difficult poke." Only once or twice in my life have I gone in and had my blood drawn on first try. I'm not squeamish about needles, thank heavens, but the older I get the older it gets. And, there's something else that bothers me about this whole process.

I have lived in my body for 100% of the time that my body has been around. I know it better than anyone else. Therefore I know that the most successful place for them to draw blood is on my right arm using the side vein. I can even point to approximately where they should go in. But ... they seem to think that my advice is simply sound and noise.

Yesterday I went through three different lab technicians. The first I told and she tried the left arm, centre vein. After failing there she prodded up and down my arms and on my hand. She left. Another came in. I told her where to try. She explored several sites and tried on my right hand. I don't like getting needles in my hand because it really hurts. The arm doesn't bother me at all, but the hand HURTS. She was unsuccessful and prodded a few more times and left. The third technician came in and prodded up and down my arms and then asked me again to show her where to try. She shrugged her shoulders, picked up a needle, stuck it in and took my blood.

All in all I was in there a very long time, had several needles and three different people come in to attempt to get blood. I wonder what happens to some who work in medicine that they become immune to the voices of patients. I wonder why they seem to think that my expertise in being 'the one with veins' is of less worth than their expertise in being 'the one with the needle.'

Monday, March 25, 2013

We were crossing Yonge Street at Dundas. In front of the Eaton Centre there were several street preachers all with signs about God's Love and Jesus' Life. They spoke through very tinny speakers, they spoke of love, oddly, with angry voices. As we went over to get a hot dog, Ruby holding tight onto my hand, I had to guide her through the messages. I hoped, fervently, she wasn't hearing them. "Deaf," "Blind," and "Crippled" were words flung into the air - typifying the lives of non-believers. On the other side of the street a young man was talking about how the culture was promoting hoMOsexULAITY which was a sign that we were in the end times.

I was frustrated at hearing disability used as a metaphor for sin and sinners and homosexuality used as a sign of ultimate evil. I was angered that children were hearing this kind of hatred. Those people who would disapprove of Joe and I caring for these two little girls were the very people we wanted to protect them from. I don't know if that is irony but I do know that it saddens me deeply. Ruby still believes that God's primary job is to love. She thinks that Jesus is a nice man who love all his children. I want her to know that God for as long as she can before she meets the God whose message is blared out on street corners with fury as a motivator and discrimination as a constant theme.

The day before I had been driven to work on a bus with a man with whom I had a powerful hour long chat. In the course of that chat he mentioned his faith but once. I knew he was a Christian. Once he did that we talked about a variety of topics and God did not intrude, or need to be praised, even once. God was always there, like a friend listening in, but his presence was in the tone and the texture of what was being said. I knew this man, from our talk over that hour, to be a gentle man who loved his children, loved his wife, loved his church and loved the role he had in the lives of others.

He never shouted.

He never angrily denounced worldly sin.

He used metaphors that were kind - of sun, and spring, and hope.

This was a man I would have loved to hear preach. And, in effect, I did. Because he knew that what he said and how he said it, what he did and how he did it, were more important that a biblical quote or a passed on condemnation. I arrived at work having been edified by the conversation and I found that I kept coming back to different parts of what was said over my day. I told Joe as much as I could remember of what we talked about.

It was hard to reconcile those people with microphones speaking to crowds who rushed away from their hatred and their anger with the gentle man who drove my bus to work.

One fellow called to me as I went by, "I'll pray for you."

It sounded like a threat.

That can't be good.

But I resolve to think less of them on the street with microphones full of hypocrisy and more of the man whose voice sounded like each word was crafted in kindness.

Sunday, March 24, 2013

Before you read this, I want to be clear that this post is about ME and MY REACTIONS not them and theirs. It will begin looking one way and then veer quickly another.

We went to see the Wizard of Oz at the theatre and I went - tense. I've had so many bad experiences at the theatre or the ballet that I attempt to emotionally prepare for the, what seems to be, inevitable. We got there and Marissa, along with Ruby and Sadie, went in the front entrance, at my insistence. There is an impressive set of stairs and I figured it would be well decorated for the theatre, I didn't want them to miss out because of going in the back way with me. And, I turned out to be right, they had a giant ruby slipper that the girls had their picture taken with on their way in.

We went round back and up a tiny elevator to the lobby. First worry over, we're in. Then we were let in a first so we could make our way down to our seats. The aisle down was set at a fairly steep pitch and when I saw that the space was equally pitched, I knew I'd not be able to stay. I could not set in my chair titled at such a degree. In fact, I can't sit on a pitched forward floor for any length of time at all. I said something to the usher who was taking us to our seat. There were others behind us and I felt their presence as they waited, not being able to get by me. I kept asking them to go by, the kept standing there. I realised, suddenly, that I have to move to get out of their way, I do, they go forward.

The usher is showing me these two little bits of wood. I'm to drive up on them and that would get me positioned right. It didn't. In the end there were three people who worked at getting something jerry-rigged for me to get into place. As they were doing this, assuring me that they'd figure it out, they did it quietly, never speaking loudly or doing anything to draw attention to the issue or the problem. At one point I found that it was my protest about not being told, when I described on buying the tickets of having a large power chair, that I'd be expected to steer up onto two small pieces of wood. In the end they managed a system that got me level. I was in place. I knew that I'd not be easily able to get off them and go up to the lobby for intermission and I secretly gave thanks that I'd wrung my bladder out before coming to the theatre. I would be able to make the time.

In the end it only took less than 10 minutes to get it all arranged. None of the staff were ever anything but respectful. They steadfastly did what they did without making a show of it. They guarded my privacy and my anonymity as much as they could. Anyone who looked would have wondered what was going on, but they'd have had to initiate the look in the first place, no sound would have pulled their gaze. Ushers came and went silently and assisted and planned with me quickly, efficiently and quietly.

I found it difficult to not layer this experience with every other bad experience that I've had when going to the ballet or the symphony or the theatre. I found it hard to treat these ushers as distinct and different from every other set of ushers that I've had to deal with. I realised I went in expecting to have to get mad to get my seat, to have to protest some barrier to the performance. It was hard to push that away and actually SEE the support that I was getting. Kind, efficient and quiet. Just what I want.

Did this affect my enjoyment of the show. No. It didn't. And that's what's important. I knew going in, and the information was on the website, that the theatre was very old, that there was a back entrance, that the seats were 'made' accessible not 'designed' accessible - I knew all that. But what I now find myself doing is dragging baggage into the theatre. The ushers may have thought me overly difficult at times but they wouldn't know that 96% of the time I go to an event like this there is an issue of some kind. I wasn't dealing with 'them,' I was dealing with 'them' as representatives of a long line of 'thems'.

I said to one of the more management types. That I worry that the girls are learning that when they go with 'Dave' there will always be a problem or two, that they learn to see my disability as something that 'always needs to be an issue.' And I do worry about that. I don't think the woman entirely understood - as I don't think that many non-disabled do. But, had I chosen to see this as a completely different set of issues with a completely different set of people, I could have had the girls see this as a 'problem solving' experience, not a 'problem having' one.

So, I need to detach the baggage from my chair. All it carries is resentment anyways. I've learned other tools from these experiences.

Saturday, March 23, 2013

We bought a night light for the girls room. It's a beautiful fairy, with a lovely wand, and she is wearing a lovely pink dress. As soon as I saw it in the 'sale' aisle of the Meijers I grabbed it. She was the only fairy left and she looked lonely. I put in the basket and caught Joe's look. (Oh.. Shit.. More. Junk.) I shot back a look (It's. Not. Junk. It's. A. Beautiful. Fairy. Grab. Some. Group. Loyalty.) She stayed in the cart, made it to the till, and the look of relief on her face when she realised that she really was going home with us was heartbreaking.

Crossing the border we didn't admit to having a Fairy on board but the fellow after interviewing us wouldn't have been surprised. OK she made it home to Canada. For a couple days she stayed hidden in the suitcase, didn't want the neighbours to discovered that they had an extra fairy to contend with. The magic that spills out of this apartment is quite enough thank you.

A couple days before the girls were to come over, we're all going to see the Wizard of OZ on stage, I had Joe bring Fairy to life by plugging her into the kitchen. Suddenly a beautiful, really very beautiful, soft pink light lit up the room. We were both surprised at the difference the light made to the feel for the room. Joe admitted that he had thought we'd give Fairy to the girls to take home but thought now that we might just keep her.

After supper tonight, we all gathered around to watch Wallace and Gromit and the girls loved the fact that the episodes had STORY as well as lots of laughs. Both of them were trying to figure out if the penguin who rented rooms with WandG was evil or nice, or if the robot dog would send Gromit to jail. They called out ideas and guesses as to where the story was going. We love that kind of involvement in watching a show together at home.

But. Then it was bedtime. Joe took the girls down to the bedroom and showed the girls their new nighttime companion. They were both struck dumb at how beautiful she was. Then, in an act of pure showmanship he switched on the light. Both girls gasped. Both girls whispered, "She's beautiful." Seconds later, Ruby was asleep, Sadie held on for a story, but she feel asleep her eyes full of pink light.

Fairy had been found in the remaindered stuff from Christmas. A dusty last minute display of stuff to get rid of. She was marked down. Attached to cardboard that was ripped. I'm sure many people didn't even notice her standing there, wanting to watch over little girls at night. Wanting to have a purpose.

It's amazing what people don't see when they don't look.

Me, I saw it because when I glanced over and saw Fairy standing, sadly waiting, on the shelf of misfit decorations, I had been thinking about the girls. I met the Fairy's eyes and saw them through the eyes of two little girls who love Fairies and who love pink and who love a bit of a light on at night.

Friday, March 22, 2013

We did a u-turn and pulled into place. The driver, a nice fellow, got out and helped an elderly woman in a wheelchair to come down her ramp and up into the bus. As he strapped her chair down, she told him the quickest way to get where she was going. She wanted him to turn the big bus around in a small, snow filled driveway and then go up a side street several yards back. He nodded indicating that he'd heard her instructions. She was, I thought, brusque to the point of rude - but then, I thought, that maybe this was just how she asserted herself.

When the driver pulled away it became clear that he'd looked at the driveway and thought better of making the turn then. My fellow passenger got very angry and called to him to stop, to back up, to turn around to GO THE WAY SHE SAID TO GO. He said something, kindly, back to her but she couldn't hear him because she was berating him. The then made a turn into a cul-de-sac and this set her off even more. She told him that he was stupid that she'd told him the way to go, that he should listen to his customers. A few minutes later she realised that he was using this as the 'turn around' point and was, indeed, headed the way she wanted.

She quieted until we were near where she was going, then she started up again. She wanted to go in the back, not the front, because there are fewer stairs that way. She kept yelling NO, NO, NO, at every driveway until we got to where he was to turn HEREHEREHEREHERE she screamed. He turned in and drove until she said hereherehereherehere. He got out and came round to get her out of the bus.

As he was undoing the straps she began chatting with him as if he was a close friend, telling him about her schedule and where she went for which appointment and she talked about how much she liked the exercises she did as part of her therapy. He responded, appropriately and with apparent interest. She was helped into the building, not easy being in a wheelchair and it not being a level entrance.

We drove off.

I thought about the grace with which he dealt with her temper and her verbal assault.

I have been in the role of both support provider and support recipient.

What I want support providers to realise when I receive their support is that I'm fully human and I want to be treated with respect.

What I want support recipients to realise when I offer support is that I'm fully human and I want to be treated with respect.

Sometimes I think we worry a lot about being treated with respect and worry less about whether we are treating with respect.

Thursday, March 21, 2013

We, all of us, meet in the parking lot of the school. Our feet crunched on the gravel as we all walked in. For a group of young University students to be so silent was unusual. We go through the doors and our entrance is watched by a young girl with Down Syndrome who was seated on a chair outside a door, waiting. Her eyes looked us over, ours were fearful to return her gaze. We were us, she was them - and we all knew it. The Principal came out to greet us accompanied by our professor. The tour would begin smartly. We trooped behind her and looked, like obedient students, whereever her finger pointed. She seemed determined that what we would see would be classrooms and playgrounds and rooms for music and rooms for art and one big gymnasium thrown in for good measure. This was a SCHOOL.

And we did see a school. But we also saw kids, lots of kids, all sorts of kids. Those with Down Syndrome were the easiest to identify - we'd seen a pictures in our textbooks. They, these kids, looked at us with suspicion. It was like they knew, somehow deeply knew, that out there were scientists in white coats who were searching for what was then being called a 'cure' but really was simply 'elimination.' I didn't know, or even suspect, that the hunting had begun.

A few years later.

I am in Montreal.

I am laughing.

Somehow, and I don't remember how I ended up sitting at a table with a group of twenty year olds, all with Down Syndrome. They were laughing, I was laughing. It's a pleasant memory. All I remember was that it was lunch time, I had been brought there for some reason. We all chatted and I remember thinking about how full of life these young people were. Full of hopes and dreams. Full of plans and possibilities. Then, I was in a car being driven away. The woman who had taken me there, a woman who would only months later adopt a child with Down Syndrome, said to me after I told her what fun I'd had with the group, "Remember that, it may never happen again." Her tone was serious and I looked at her and said I didn't know what she meant. She said, "Surely you've noticed that they are disappearing. Surely you've noticed that where were once people with Down Syndrome there are now only empty chairs." I hadn't noticed. I really hadn't noticed. I closed my eyes and thought of my last visit to a sheltered industry. They weren't there.

Many years later.

I am in Dublin.

I am in shock.

It's the Down Syndrome World Congress on the campus of the University of Dublin. I am standing surrounded by people with Down Syndrome and their families. Over the next several days I would do workshops for families, workshops for people with disabilities and I would sit at a book table and chat with many people from many places. It seemed like a celebration. But it also seemed like a coming together, a gathering of reassurance. It was like we were all getting a group hug without being touched - we were with the survivors. We were with those who's job had become much more serious. Much, much more serious.

A few years ago.

I am in Northern B.C.

I am listening in earnest.

I don't remember his name. I am so bad with names. I had a picture of him and I, together, once, but can't find it either. Joe and I are not good with pictures. He is speaking to me about having Down Syndrome. His awareness of the moral issues raised by eugenics was astonishing. He wanted to make sure that everyone he met learned, from him, that having Down Syndrome is just a way of being. He wanted to be a beacon of hope that any expectant parent could see, shining through the darkness of fear and the purposeful ignorance of the medical community. He wanted to live his life seen, he wanted to be out and proud as a person with Down Syndrome. He understood that there was a battle going on for the existence of those like him.. He got it.

Now.

So do I.

Now.

So do many.

That little girl in school eyeing us with wariness. I think of her often. I see her sitting there, waiting. She looked so alone. Entirely alone.

I wonder who came for her.

Because in that day, in that time, she could, truly have been, entirely alone.

Now, in a different time, in another age, little girls and little boys with Down Syndrome have parents, and homes, and communities.

But the scientists are ever closer.

One day.

I wonder how far away.

There just may be a little girl sitting outside a door underneath a sign reading, "and then there was one."

Wednesday, March 20, 2013

Yesterday, again, I was caused to pause and think because of a comment made and a question asked. This time it was 'John R' who left this question:

Question and advice please!

I was at a rock and roll show this
past week and was standing in "the pit". It was fairly crowded and lots
of people were standing at the stage,belly-up. The stage was at approx
four feet high.....In comes a young man, with a high tech power
wheelchair, using a respirator and with a ton of adaptive stuff
attached. He was with who appeared to be his parents. He was assisted
in to the pit and slowly made his way to about 10 feet from the stage.
This is a very loud and raucous rock and roll band who was performing
and this fellow was obviously, like me, appreciative of loud and rockin'
music. Lots of dancing and cheering and moshing (that is like dancing
but not)

....several people moved from his way so he had at
least a slight view to the stage but a few people were oblivious to his
presence, stood in front of him and moved in front of him and
occasionally bumped his chair, his adaptive equipment and were just
plain rude. A few times I saw his companions move him one way or
another, but he continued to stay for the show, watched the racy dancing
going on to his left side and seemed to have a good time.

Here
is my question, should I have asked the rude and oblivious people in
front of him, after I conferred with him, to step aside so he could have
a complete view of the stage. At his level and height in the chair, he
was blocked. He did not seem to mind but I know if I was in his vantage
point for the show I would have been disappointed. Should I have
advocated with/for him??

On person responded to John and I thought I'd like to hear more ~ what do you all think? What is your criteria for entering in and speaking up? What would you have done in this situation?
I like to think through these situations either in my life or in the experience of others ... it gives me a chance to prepare a bit for next time.

Because there is always a next time.

I want to add a wrinkle to John's question though ... would it make a difference, regarding intervention, if the person intervening was a non-disabled person or a disabled person? I'm curious about that because, occasionally when another disable person has spoken up when I've been taken aback by something - I've received that assistance in a different way than I might if the person assisting was non-disabled. I'm not sure of that ... but I think, for me, it might make a difference.

Tuesday, March 19, 2013

An interesting comment was left yesterday, although I have to say all of my comments are interesting, that asks a good question, "just what the hell do we want?"

Here's part of that comment: Times we lament "Why don't people see me?", as at the art museum when
they stand in front of the chair - and other times we don't want to be
noticed or pointed out. It's hard to find a balance. Sometimes you
don't want folks to notice the difference - as you are an adult like
other adults, other times you want consideration for your needs.

It's true, of course, I have written about the invisibility that comes with disability - the fact that people step in front of me at museums and my magic disappearing act in line ups. In fact at the parade, I experienced two very different phenomena ... being singled out like I wrote about yesterday AND having people step right in front of where I was sitting on the curb. It was odd being highly visible and completely invisible at the same time.

So what is it I want? (I do not presume to speak for anyone else.)

Well.

In the case of my being at the museum, or being stepped in front of, all I want is ordinary courtesy. The same courtesy that is shown to others. Those people who stepped in front of me did it without any concern for the fact that they were blocking my view. They most decidedly did NOT step in front of other people standing. Once, and I kid you not, a couple apologised to Joe for stepping in front of him, and then stood right in front of me as if the spot was vacant. I just want the same courtesy shown to me as they show to other people.

In the case of being singled out for attention, all I want is the same degree of attention that is given to other adults. The generic wave to a group of people watching - not a specific 'how do you do little man' wave directed at me because of the fact that I'm in a wheelchair. If you aren't pointing out other adults then don't point out me. It's fairly simple.

So I guess, in fact, I want ordinary courtesy and ordinary acknowledgement. I don't really want anything more or less than that. Sometimes ordinary looks extraordinary - I want accessible bathrooms - because I want to pee - and that takes adaptation. I want accessible parking - because I want to be able to get to where others go - and that takes adaption. But that's all with adapting environments.

I don't really want adapted social interactions. I want those to be typical and ordinary. I want the same courtesy as others, I want the same degree of anonymity as others expect.

I know this all looks like 'WHAT I WANT.'

So let me say that I also think that I need to be equally courteous. I need to expect the same treatment and deny the 'pity-privelege' ... 'oh please go ahead of me' or 'I'll take you next even though others have been waiting' ... it took a while to work up the courage to say 'no thanks, I'll wait my turn' ... only because I didn't want to be thought rude. So I want from others and I want for others.

One of the things I like about having a blog is this kind of dialogue that gets me thinking and allows me to be challenged by the respectful comments of readers. I have astonishingly nice commentary here on Rolling Around in My Head - even when people disagree or ask questions, it's all done with ...

Monday, March 18, 2013

For reasons I'm still deciding if I want to share publicly, Joe and I did not march in the Saint Patrick's Day parade with the contingent of staff and members from Vita. Instead we left in time to get over to Yonge Street and watch the parade go by. We found a patch of sidewalk that was lit by the sun and settled in to enjoy the parade. The day was cold but the sun was warm and we had a great view.

People streamed by on floats and in bands and behind banners. I have enjoyed parades ever since I was a kid. I remember once at the Calgary Stampede, in 1965, running out and shaking Walt Disney's hand as he went by in an open convertible. That day is still stamped in my memory and ever since I've loved parades. This parade didn't have a Walt Disney but it did have leprechauns and shamrocks and firefighters so it was just as much fun.

The kids who were sitting beside us were having a great time. There was a cute baby girl in a bright pick toque who every now and then would randomly wave and then giggle with delight. It was great watching them have fun.

But one thing wasn't so great.

Several times over the course of the parade, various people on floats or marching by would point at me and then purposely wave. I hate being singled out like that. I hate being reminded about how visible I am. I hate the sudden and complete loss of anonymity. But even move, I was disturbed to notice that this was done to me and the kids around me. It wasn't done to any of the other adults who lined the streets in my area.

The kids were delighted at the gesture. They all delightedly waved back.

Me?

Not so much.

I didn't know how to respond. I didn't want to be rude. So I waved back the tiniest wave I could imagine. To their credit I could see that several of those who waved at me saw my embarrassment and their exaggerated smiles, great for kiddies, changed to looks of apology fairly quickly. One fellow looked shocked as he realised, from my reaction, that he was waving and grinning at an adult man who he'd just embarrassed - I've guessing he'll never make that mistake again.

One of the most profound struggles that we, as disabled people have (and this is particularly true for those with intellectual disabilities) is the fight for adulthood. The recognition of, and the rights accorded to, the status of 'grown ups.' Many of the people with intellectual disabilities I have known or have worked with have been desperate for adult rights, to be free of constant parenting. To be in relationships, to have jobs, to be spoken to in regular tones of voices - all things still accorded to but a few.

I remember, appropriately, being in Ireland as a guest of Down Syndrome Ireland, (whose banner you can see if you look carefully at the picture - it's just behind the Vita banner) and doing a workshop for self advocates with Down Syndrome. I made a joking reference to a young man, perhaps in his early twenties, that he was 'just a kid.' Now I want to be clear here, I wasn't making that remark because he had Down Syndrome, I was making that remark because he was in his early twenties. I think that many of the people who work in my office are 'kids' ... because I'm 60 and they are decidedly not. But, even though my intention was to joke about his age, he took great offence. He gave me a stern lecture about being a man. He wasn't a 'kid' he was a man and he wanted to be treated like an adult. I apologised immediately and sincerely. I got it.

And I got it again.

When I was waved at in the same way as an infant girl in a pink toque was waved at.

Sunday, March 17, 2013

Driving home the other day we listened to an interview on the radio with a woman who was being asked about Saint Patrick's Day. The interviewer wanted to know how it has become such a world wide celebration. The woman was stymied by the question. In the end she said that she had no idea, but that she, herself, was taken aback by how many people from so many different countries and cultures wear green on Saint Patrick's day and who good the shamrock looks painted against every possible skin tone. The interviewer then moved to the inevitable talk of parties and green beer. At that point we turned off the radio. Not because we weren't interested but because Ted, our GPS, was beginning to give us lots of instructions. We're at the age where we can cope with only one source of sound at a time.

When Ted fell silent again, Joe and I talked about the interview. We both felt that the reason why Saint Patrick's Day is so widely and so wonderfully celebrated is because it is, perhaps, the only intentionally inclusive holiday there is. It simply has no boundaries. We've all heard the expression, "Everyone is Irish on Saint Patrick's Day." In fact if you Google those words you will get an astonishing 57,000,000 results. The whole thing has become about inclusion and welcome. It is a holiday where 'all finally means all.' It gives me hope to see that humanity can embrace humanity, it gives me cheer to see the colour green, one day a year, symbolise the human community.

I've written before about Saint Patrick's Day and our experiences at the parade. It's become such a tradition at Vita that I begin to be asked questions about the parade in early January. One fellow, for weeks, asks me every time he sees me, "Are we going to be in the parade again this year?" And every time he asks I assure him that we are definitely going to be there. He grins in anticipation. Another member, a woman who I see regularly, doesn't ask me about the parade she just says, "I'm marching in the parade again this year." It's become their event, their celebration, part of their personal stories. We march and we hand out cards with information about the "R-word" letting people know how much words hurt. We have two messages, one we hand out on cards and one that comes from just being there. No more shame, no more shadows, no more silence - we're home for good.

Again this year in working with the Saint Patrick's Day Committee has been so easy and so simple. They do so much work, yet they never seem to be rushed, never seem to be overwhelmed by questions, they are astonishing both for what they do but also for how they do it. Never once have I ever felt anything but their incredible warmth and their amazing welcome.

Warmth and welcome.

Perhaps that's why, one day a year, we all celebrate a world that could be.

Saturday, March 16, 2013

"I hope you didn't mind," he said to me, his voice soft, his face full of concern.

I told him that I thought he was a good dad and that I wish more parents would do what he did. He responded that he wants to raise all of his children to understand, respect and value those around him. "He is going to live an a very different world than I grew up in. It will be a world where difference is the new normal. I want all my kids to be ready."

Here's what happened:

We pulled into the Duty Free shop just under the Blue Water Bridge, Joe got the chair out and we headed straight for the washroom. Joe had drained his tanks just after filling the cars tank up at the gas station, so once he got me through the door, he went off shopping. A young boy was leaning against the wall, he'd have been about Sadie's age, 3 nearing 4. His dad was standing at the urinal. I rolled up to the accessible toilet and, of course, it was full. Those are the most popular stalls.

I noticed the boy staring at me when I rolled by but, unusually, so did the dad. As he was washing his hands he said to his son, "staring at someone is the same as calling them a name." The boy began to protest that he didn't call a name, "I know you didn't call a name out, but when you stare at someone it's the same thing." The boy again protested, a little less fervently though. "That man in in a wheelchair. That man is big. But that man is doing the same thing as everyone else. There's nothing to see but another person doing what everyone does." This whole thing was explained without anger, without a lecturing tone, Dad's tone was gentle and caring, like he really just wanted his son to understand.

The door to the stall opened. I rolled in. When I came out, of course, everyone was gone. Later in the store as I was picking up a couple of toys that I thought the girls would like, the boy noticed me again. He came over and said, "Are those for your kids?" I told him that they were for two little girls who I know will like them. He nodded. Then he looked at me and smiled. It was, perhaps, the nicest apology I've ever gotten.

On my way out dad stopped me and spoke to me, worried that I might have been offended by what he had said and done.

As we spoke I got the sense that I was talking to a parent who loved being a parent. More than that, I got a sense that he had a vision of the kind of world that we could have if children were gently taught that kindness and welcome were the easiest gifts to give.

Friday, March 15, 2013

Hi, Joe and I drove for several hours last night after finishing in Saint Louis and we've decided to go the rest of the way home today so there's been little time to do anything much. I'll be back blogging, if not tomorrow, Sunday. Sorry folks.

Thursday, March 14, 2013

Often I am the only person with a disability in a room. Actually, change that 'often' to 'almost always.' But yesterday, by chance, at the book table that I was staffing as Joe was checking out of the hotel, two of the audience members who were also wheelchair users came up to the table. We fell into a kind of easy chat with one another. We shared experiences, made jokes that maybe only we would get, and generally shot the breeze. It wasn't for long, but I soaked up every minute of it. Even though I was in a crowded room, and even though the people in that room were almost universally nice, those few minutes mattered.

I was there talking about community connections ... and ironically, for me, that's what really happened during that short, unscripted and unscheduled meeting. There are times when it just feels good to talk with those who have sat where I have sat, who have rolled where I have rolled. There is a degree of commonality that crosses borders, cultures and even language some times.

Joe and I went to a movie theater in one of the suburbs of Toronto one time and there was a young woman who was tasked to take tickets at the door. She was painfully shy, but she also clearly liked her job. She would rip the ticket, give it back and quietly announce the theatre number. When I handed her my ticket she noticed my wheels, she looked primarily at the floor, her gaze came right up to my fact, something she'd not done with any of the others ahead of me, she smiled and softly said, 'Thanks for coming.' I said it's really nice to see you here. I meant what I said, it wasn't a pat greeting, it was a statement of loss of aloneness. I knew she understood.

I've mentioned this a couple of times in conversation with those who do not have disabilities and some have become offended. They say that this need of mine to occasionally chat with and be with other wheelchair users demonstrates a weakness in me. That I should be completely happy living the privileged world of complete inclusion. I ask, How can inclusion mean exclusion ... if all means all wouldn't it be natural that I would run into and be able to communicate with others similar to me.

I want inclusion and but I will fight any form on inclusion that excludes others.

You see, I still think, all means all ... and for all the right reasons.

It's been a while since I've been on a road trip. Not since last year, in fact. This is typical, January and February aren't really good times for planning a training. So it's usually in March that we head out again.

After my lecture yesterday, having met wonderful people and having been asked a lot of questions, I was tired and very grateful for having been able to be there.

On the car ride to the next stop, I 'Julie Andrewed' my day and came up with a list of a few of my favourite things. My list is definitely missing little white packages tied up with strings ... or anything near the like. However my list are just a few of the things that make it possible for me to get from there to here and back again.

Every one of those things, every one, had to be first thought of and then fought for ... to the men and women behind the thinking and the fighting.

Tuesday, March 12, 2013

I have a quick question. It popped into my mind yesterday afternoon. I was over at the Mall, located conveniently across the street from my hotel. Sometimes the world is designed by credit card companies I'm sure. Anyways, I watched two women with enormous, absolutely freaking enormous, strollers manoeuvre around each other, all while chatting about their babies. Their skills were many an apparent. They had good understanding of the dynamics of space, their could have been but wasn't a horrible collision at any time, They had superior driving skills as they negotiated corners and managed to their their Hummer sized strollers and their Mac Truck Prams down little aisles without knocking anything off the shelves. Amazing.

So here's the question. When one of those self same carriage drivers was getting off the elevator with her uber stroller, why did she fall into a dread panic seeing me sitting waiting for the lift? It was like she didn't know what to do, how to get around me. Her sense of space was lost, her skills dribbled out her fingers, she panicked. I had to reassure her that there was lots and lots of room. She inched past me careful trying not to hit me, and as she didn't come within a foot of me, I felt entirely safe.

I heard her release the breath that she held all the way past me, Hmmm.

Sometimes I think that we, people with disabilities, take up way more space in the world, in the minds of those who see us as a bigger problem than we are.

Monday, March 11, 2013

Joe rode down the elevator with the cart full of luggage. I waited for the elevator car to return and take me down as well. The door opened and I backed on. It was only one floor down so the ride was quick. The elevator opens just off the main lobby of the hotel. Two people, maybe five years older than I, were waiting right at the door - as people do, and were surprised to see someone wanting off - as people are. The stared at me briefly, confused as to what to do, then the woman said, "Are you all alone?" I said that I was, it was the man who spoke next, "Good for you!" I nodded in thanks as they backed up and I pushed myself into the lobby to wait for the car to pull up front.\

I got in the car laughing and told Joe that my day had started off well, I'd already exceeded expectations. It's wonderful to have the bar set low sometimes, it make success a kind of foregone conclusion. We headed off on the last leg of the drive to Independence, a city just shy of Kansas City on the Missouri side of the river. Over the next few hours we listened to a book on tape, chatted about the upcoming work week, planned our day off on Monday. The usual travelling together stuff.

In all that I thought about the interchange with the couple. What surprised me was that it didn't annoy me one bit. Normally that kind of thing gets to me - people being awestruck that I'm at all independent or able is more irritating than not. But I didn't feel that at all.

I think it was because of their voice. Well, more specifically, their tone of voice, was a bit different than what I'm used to. It was more encouraging than patronising. Does that make sense. I felt like it was a bunch of old folks cheering each other on to do whatever they can to keep doing whatever they can. It felt like it was just a 'good on you for doing it on your own' ... a 'right on sister' or a 'atta go boy'.

Its not so much the words is it? Its the tone and intent.

But maybe I got it wrong, I hope not though, because, in fact, I did feel encouraged. And sometimes, we all need that don't we?

Sunday, March 10, 2013

Joe and I stopped at a western store to take a break from a long drive and to shop for some real cowboy boots for the girls. As someone who was born in Alberta, Canada's cowboy country, I've always liked western fashions - and the boots are amazing works of art. Being over 60, the first thing we did was hit the washroom. It was tucked in behind a huge collection of saddles. On coming out, I rolled over to take this picture. I am NOT a photographer but wanted to try and get a sense of the place.

I noticed, off to my left, a fellow, older than me, on a heavy duty scooter. He was watching me take the picture, interested and a little curious as to what I was doing. I didn't want to explain that I was a city boy and the last time I saw a saddle was in a Country Music Gay Bar in San Francisco - where we joined in with the line dancing when we'd had enough beer to figure that it was within our capabilities. So I just smiled and made a remark about the incredible collection.

We went over to where they had kids boots. They had dozens!!! It was so difficult to choose. Finally we figured that we were getting boots for two active girls who aren't afraid of mud or puddles or sploshing around. We were then able to choose something stylish and functional. After there I found a whole section which allowed me to do my Christmas shopping for both my Mom and Dad - they are done for this year. That feels good.

Throughout our time in the store I noticed the old dude on the scooter. Finally, after seeing him talk with one of the clerks, we realized that he was store security. His job was to wander the store, keep an eye on all the tourists shopping, and be a presence without being a PRESENCE. I realized then why I found the store so incredibly accessible. I could get down every aisle, make every corner, find everything I was looking for - his adapted work environment made the place perfect for me.

But wait. We also noticed that there were several families, in large groups, who were piling down one aisle and up another. The whole place was welcoming.

Accessibility is just good design.

I didn't spend more money in the store as a reward for accessibility and for positive hiring practices but I DID spend more money in the store because I could get to where I wanted to go and as a result found Ma and Pa's gifts.

Accessibility is just good business.

We left the store and I rolled down the gentle slope to the car - we'd had a break, we'd had fun, we'd encountered a welcoming spot ... it's amazing what an experience like that can do to a day..

Saturday, March 09, 2013

When we looked up the University of Toronto Art Centre it said that it was wheelchair accessible. How I wish they would tell you if you had to go in a separate entrance. I think that if you have to use a back door, or if you have to go by garbage kip, or if you have to go over uneven surfaces, you should be told. I like to make an informed decision. In this case, I wanted to see their exhibit on Peruvian silver, I would have still gone. But, I like to be forewarned.

We got there to find this sign indicated that wheelchair access was round back. What stunned me though was that they didn't use the universal wheelchair symbol, you know the one on parking spaces and bathrooms, and instead chose to use a picture of an old, black, medical looking chair. An empty chair at that! I was stunned. This is an 'art centre.' presumably they know that art has the ability to ennoble and that it has the ability to denigrate. This image is so utterly medical that it speaks of institutions and frailty and ill health. I know few people with disabilities who use these chairs, other than those who have to because they rented one from a medical supply company or they are using it in some kind of public place.

By the time we came in back, up a ramp which was almost completely blocked by a bike attached to it, by the garbage and through a fence that, if Joe wasn't there to open, I would not have been able to get in, I was a bit in a mood. So, I protested. I was told that my feedback was welcome. Yeah. Thanks I suppose.

So I started the tour in a foul frame of mind. Joe was annoyed at me being annoyed. However, we did what we came to do. We saw the show. It was good. We chatted about what we saw, I called Joe to see this, Joe called me to see that, we talked about what we saw and what we read. I enjoy museums. I do. They feed a part of my soul that can get, quickly, undernoursihed. We left in a much better frame of mind.

On the way out the woman who I had complained to asked me to explain to her what I didn't like about the picture of the wheelchair. I told her. She listened. She said she would pass it along. I think she will.

Friday, March 08, 2013

I met a woman ... years ago. She told me of the exact moment that she learned that her baby was born with a disability. The doctor wouldn't let her hold the child. The nurses counselled her to give up her demand to cradle the child in her arms. The child, her daughter, was born a vegetable - it would be better for all concerned if she walked away from the hospital and described her living daughter as lifeless. The baby would be take to a special place and be cared for by people who were trained to care for babies who weren't babies.

Her face set, at this point of the story, and she said in a voice much younger than the one that had been telling the story, "I will hold my daughter!!"

And she did.

She took her child home, against the advice of all. The predictions fell on her like acid rain ... your husband will leave you ... your other children will resent your choice ... your life will be one misery after another. She raised her children, she loved her children, she fought for her children, all of her children, she was, in short a mother.

I met a woman ... years ago. She told me of the exact moment that she knew that what she was fighting was bigotry and prejudice. Her son, the boy she loved, had been called 'untrainable' and 'uneducable'. She knew him as something different: a boy who learned to dress himself and learned to feed himself and learned to make jokes with words. She took that boy and day after day ... not of struggle but of laughter, she taught him to read. The moment he picked up a book and began reading aloud, to her, she knew. She knew they were all wrong.

She called other mothers of other sons, and other mothers of other daughters, children who had, to a one, been called names by experts. They got together and started a programme operating out of various homes. A small travelling school peopled by the untrained teaching the untrainable was born. And everyone learned. That school became a programme, that programme based on a premise got a premises. So began services to people with intellectual disabilities in her home town.

I met a woman ... years ago. She fought her entire life for the right of kids with disabilities to go to regular schools, to be in regular classes, to walk to adulthood on the same sidewalks as other kids. She was called names. Lots of names. Names reserved for woman of strength. Names reserved for women of ideas. She received threats. Lots of threats. Threats reserved for women who both listen AND speak. Threats reserved for woman who stand firm in the face of male anger. She wanted to, before she died, step into the promised land. And so she did ... touring a school where kids were kids and children with disabilities ran the hallways.
She went home and wept.

I have met women.

Right now, at my desk, I am the only man in the offices around me. I am surrounded by women. And that means I am surrounded by creativity and humour and strength.

Today is International Women's Day ... and as such I recognize that it was the defiant love of mothers, the uncompromising vision of women, that began what has become the community living movement.

Thursday, March 07, 2013

Joe and I headed over to see Luminescence showing in the University of Toronto Art Centre. It's a lovely walk from our place over to the University and we took our time wending our way there. We wandered the walkway through Queen's Park and enjoyed seeing the park in the middle of a Canadian winter. We got thoroughly and profoundly lost on campus and asked several people where the Art Centre was. Let's just say that they really need to raise their profile on campus. One woman, I'm guessing a professor, said that she's in sciences so doesn't know anything about the arts ... she was joking, but it's kind of a scary joke to make.

Finally we went to the Visitors Centre.

Let's stop and consider what a visitor centre is ... it's a place where, um, visitors go. It's kind of like the public face of the University and I would think that they would take this fairly seriously.

Um.

No.

At least not for people with disabilities.

I went in through the doors and found that I was on a platform facing several steps heading down into the centre itself. There was a small elevator that had a big sign hanging off it saying, "Out of Service." There was nothing giving any indication that us disabled folks should do anything other than just turn round and leave. Joe went down to the woman who was serving someone else. She saw me sitting up on the platform and glanced away quickly - seeing me would require doing something I guess. Anyways she spoke to Joe and as I heard what he asked I wanted to clarify what he said so I hollered down to her. Hollered!! She gave no indication that me being up there, stranded, would effect her service in any way. So we had a brief interchange, yelling information back and forth.

I realized, then, that I hadn't asked the big question, so I called back to her, "Is it wheelchair accessible?"

She stated the obvious ... "It should be."

Really?

Well, lady, EVERYWHERE SHOULD BE, LIKE THIS FRELLING PLACE SHOULD BE... BUT IS IT??? (I didn't say that ...)

I said, frustrated, "Should be ... isn't very reassuring."

She said, "I haven't been over there in a while."

I said, "Shouldn't someone working in the visitors centre have the answer to basic questions about access?"

I guess she was done with talking to me, or maybe she was just hoarse from yelling to me up on the platform, because she then, ignored me.

Welcome indeed.

Visitor Centre --- maybe they should clarify just who classifies as a visitor.

Tuesday, March 05, 2013

Today, just before writing this blog post, Joe and I were driving home and I noticed a store with a 'going out of business' sign on Yonge Street. In the window stood a quite beautiful plaster reproduction of a hand signing 'I Love You,' in sign language. For those who don't know the letters "I," "L" and "Y" in finger spelling are put together to make this sign. I have always liked it. When we got home I called the store to see if it was for sale or just display purposes. It was for sale. We headed down to get it and it now sits on the corner of my desk. It was the perfect day to buy it because today something happens that we make artistic history ... but then, that's the subject of my blog post ...

(Remember as you read this that I'm writing it before the 'event' happens)

***

I wasn't the audience!

I didn't exist there and I didn't exist here.

THAT'S WHAT WAS WRONG!!!

I didn't understand it until I read Andrea's blog post about the first all silent, all sign episode of an American Television programme. Switched At Birth will break new ground tonight. Andrea is well known to readers here as she frequently comments and often her comments add new dimensions to what I've written about. As I was reading her post describing the first time she 'met herself' in a book ... I was drawn to remember.

Joe and I went to see a movie called A Different Story and were excited to see a movie that had been trumpeted as having gay characters in what was being coyly called a love story. We sat there, horrified at what we saw. These weren't gay people, these weren't people we knew, they sure as hell weren't like Joe and I. The whole thing seemed like this massive betrayal. Worse, we sat in a theatre full of straight people who were lapping it up, loving the story of a gay man and a lesbian woman who fell headlong into heterosexuality as their hearts found each other. I felt so utterly disenfranchised. Didn't they even think of talking to some gay people, didn't they think that maybe gay men and lesbian women might be actually gay men and lesbian women. I couldn't understand why they did what they did.

Until I read Andrea's piece.

As she described being told that the deaf little girl in the story wasn't there for her ... she was there for hearing girls. Andrea wasn't in the audience - the writer never considered that there would be a little deaf girl reading the book. The writer couldn't conceive of deaf people as AUDIENCE. And as a result, they had no, that's none, responsibility to ... a little girl named Andrea.

The same was true for the movie we watched that day. It wasn't made for me. No only was there, at the time, no representation of 'me' on the screen there was no consideration of 'me' in the audience. It has been with the discovery of gay people as 'audience' as 'market group' that things have changed. That and watchdogs like GLAAD which now carry a big stick and that stick is ... our wallets and our voices - as audience. Comedians and commentators who use the 'R' word fear little in the way of reprisals because they are speaking to an audience that they understand to silently endorse their language ... because we, as of yet, have been excluded from the audience.

But that's changing isn't it?

We are becoming more visible and more vocal. We are beginning to ditch 'the attitude of gratitude' and adopt and 'expectation of respect.' This is a change that has been long in coming. And it's about time.

Tonight, at the end of Swtiched At Birth, there will be one hand clapping and one hand signing 'finally' ...

Monday, March 04, 2013

But there is also another smile. One that I've known since the first time I recognised another gay person at a conference, years ago when we would have been fired because of the backbeat of our hearts, we shared a smile that said, "I see you." It was a wonderful kind of sharing. It was nice to been seen, even by just one other. It was a loss of aloneness.

I had that smile today on the subway. Joe and I were coming come and I hoped on the subway and quick turned into place. I then noticed a smile of recognition, just like the backbeat days, by a man with Down Syndrome who was holding on to one of the subway poles. I smiled back. When I did his broadened to a grin. Again, it was a loss of aloneness.

He noticed that I was being stared and and I wondered how he felt about it. I'm sure that those eyes that assaulted me had, moments before, been pummelling his right to simply be on the subway. He made his way towards me with clear determination.

"They were staring at me before," he said loudly while pointing at some of the people on the train. They looked mortified, not at their behaviour but at his. "Now they are staring at you. It was bad when they did it to me and now its bad that they are doing it to you."

Now, there is huge tension on the train.

When we got to the next stop a number of people got off. I'm not sure they were all at their stop but, I didn't care, and I didn't miss them.

Then I was asked if I knew what self-advocacy was. He told me that he went to self advocate groups and he'd learned to speak up for himself. He said that I should go. Then something marvellous happened ...

... he told me that he went to a class and he'd learned that when people were staring at him to think to himself, "I'm OK, You're Mean." He then chanted it out loud for me to hear. The few remaining people who had been on the train before looked completely shamed. Now by their behaviour, not his.

I didn't tell him that I had created that training and that I'd probably trained the trainers who trained him. He laughed as he described the role play, the one I'd created, and how much fun it was. I glanced at Joe who has been in that roll play a thousand times, he was, I could see, listening carefully to every word being said.

The fellow said that I should find that class and I should take it.

And.

Hes suggested I join a self advocate group. He thought it would be as much a help to me as it has been to him.

Sunday, March 03, 2013

After a struggle a loud "CLICK" echoed in the bus. I was looking out the window beside me and when I heard the driver chuckle, I turned to see what was happening. A small, lovely, dog was standing on the ramp and looking into the bus. The dog, one I see often around the building I live in, was looking curiously at me, at the wheelchair and the work that was being done to strap us down. His human, a nice looking fellow, was waiting patiently for the dog to see what he wanted to see. After a few seconds the dog turned around and trotted back to continue his journey back into the building. I waved at the man who was walking the dog, he waved back.

The dog lives with two men. Both of them take responsibility for getting him out for a morning walk. The guy I saw today once joked with me that they were the 'Three Amigos.' The other guy, yikes, isn't what you'd call warm. Unlike the guy today, he would never stop, never wave, never speak to me, to Joe or to anyone in the building. He seems like his inner controls are fused at one setting:

Temper: Aggravated

Temperament: Annoyed

Temperature: Almost at boil

At first I thought he was brusque and rude to me because of, well you know why, because that's what I do. But then I saw he's like that with pretty much everyone else. When he's walking the dog, he has a 'shit, piss, and be done with it' attitude. There's no pause while the dog sniffs or investigates. There's certainly no pause for the dog to be address or petted by others. We are not the only ones in the building who have a 'here let mommy rub your belly' approach to the dogs in the building. Like about 10 other residents I know, I know the names of the dogs having no idea about who the hell they live with. Pooch has clearly learned, when with Gay Guy Gregarious, I can be petted and have friends, when I am with Gay Guy Grumpy, I am to rush thorough my routines so I don't get yelled at and my collar yanked.

So my day began by seeing the lovely pooch standing having a good old look into the bus. He looked so happy standing there, having a few minutes to investigate his world. He was doing what dogs do - he trotted back into the building almost dancing happy.

That self same day, after work I was out in my wheelchair. I run into dog and GGGregarious. We had a brief conversation:

Me: It was nice for your dog to visit me on the bus.

GGGregarious: He's curious about everything around him, I actually admire him for that.

Me: How long has he been your dog.

GGGregarious: Oh, he's not mine, he was living him when I moved in.

Me: Oh ... I haven't seen ...

GGGregarious: No we broke up a couple months ago. He moved out.

Me: He didn't take his dog?

Here there is a smile, then, "Well, what happened was interesting."

My face indicated enough interest to be a response.

"He'd packed everything up and loaded it into a friends van. Then when he came upstairs to get his dog, there was a huge confrontation."

"Oh you got into a custody battle did you?"

"No, no, I knew that he'd had him for three years before I moved in. I had no claim on him. It's just, well, the dog went on strike. He refused to move. It was clear he didn't want to move out,. For about fifteen minutes he tried calling him, begging him, promising him stuff even. When he tried to take him by force the dog growled and went behind my legs. He just wasn't going to move."

I liked the idea of the dog saying, GGGregarious treats me well and you are called GGGrumpy for a reason, piss off.

In the end GGGrumpy simply got angry and blamed GGGregarious for turning the dog against his former owner. "All I said," he told me, "was, 'You did that yourself.'"

GGGregaious says, "So I don't call him 'my dog,' he chose me, I chose him, so he's the dog I live with."

After we chatted a little more he said, "You have to listen when someone makes a choice don't you."

I agreed.

I feel like getting a bullhorn and run through group homes and nursing homes and all places where people receive service ... blaring out the message: YOU HAVE TO LISTEN WHEN SOMEONE MAKES A CHOICE!!!"

Because someone can't talk doesn't mean that choices aren't made every day.

In the lobby waiting for the elevator, the lovely pooch looks up at me, as he always does, asking permission to stand up with his feet on my chair so that we can say a proper goodbye. I nod, he Stands and I scratch him behind his right ear ... it's his preferred ear ... don't ask me how I know, you know the answer to that already.

Saturday, March 02, 2013

I don't have much hair, but what I do have can be incredibly unruly. It is our tradition that before heading out on a trip we both get hair cuts. After work yesterday we headed over to make an appointment for Saturday morning with 'our' barber to get shorn. I know he's other people's barber too but I acknowledge that only grudgingly. So when we arrived at the salon to find that the roof had collapsed and a sign announced, redundantly that there had been a 'problem' and the shop was closed indefinitely I was taken aback. The sign indicated that there was another salon on the second floor and perhaps they could take care of customers.

We headed upstairs to see if 'our' barber was working there now. I found it odd that I was feeling a bit upset. As we made our way to the other salon I looked at the reason why I was bothered. The first thing that came to mind was that mine is not a difficult head of hair to cut. It's more like mowing that styling. He takes the clippers, sets them at the shortest level and then runs it back and forth over my head until everything is done. Then he clips my eyebrows and ears and, voila, we're done.

I've get the kind of cut that isn't, um, complex.

So.

It's not about that.

I think what was bothering me is that 'my' barber is tremendously gifted at how he does what he does. I've noticed that he has a really devoted clientele and, while there is no question he's gifted at what he does, he's particularly gifted at his skills of making everyone feel comfortable and welcome. The first time I showed up in my wheelchair he didn't blink an eye. He had the salon chair out of it's place, so I could pull in, with no muss and no fuss. You'd think he'd done it a thousand times before. Good heavens when I go to a restaurant they fumble all over themselves trying to figure out what to do with the chair! This guy made it not a big deal which IS a big deal.

From that moment forward he created a place that I didn't feel even slightly that I was in the way or that there I was any bother. Moreover, he always makes sure, when we're done and he's using the blow dryer to blow away any hair, to make sure that the base of the wheelchair and the tires, aren't covered in hair. I didn't ask him to do that, but he just does.

So, in my head I was worried about how long it would take to find someone who would give Joe a good haircut, a harder task than you might imagine, and who would treat me as a welcome customer. We were both pleased to find him working upstairs and we booked our appointment. Great!

What I then thought about was how this was kind of like what the people I work with must feel when there is a sudden and often unexplained loss of a favoured staff. A comfortable routine with someone who knows and respects your needs is completely disrupted. There is no predicting how the next person will be and there's no way around the fact that you need the support so you just have to deal with what you have to deal with. The sense of vulnerability and anxiety must be tremendous - hell that's what I felt at the loss of 'my' barber!!!

Friday, March 01, 2013

Support, Service and Success Newsletter for Direct Support Staff is now out. This issue is on providing good care to women with disabilities. We were fortunate to have Susan Ludwig Goharriz, BSc RN author the piece for us. I'll bet you learn something from it! I did. The newsletter is now mailed out, if you did not get it please re-subscribe. The subscription is free ... send your email address to dhingsburger@vitacls.org .

Joe doesn't write a blog. But if he did, he'd have written about today. He had a pretty good morning but he had a really horrible afternoon. On the way home in the car he said, "We need to make an emergency stop at the liquor store, I'd like a beer tonight." So. That's what we did.

Over the next couple of hours as Joe recounted what happened, I don't think he wants me to write it here, he met with something that astonished him.

Absolutely.

Wonderful.

Human.

Kindness.

Now, for those of you who know Joe, you'll agree with me that Joe puts a lot into the pot. He's a good guy. He's a kind man. He's ready, always, with patience. He brings a lot into relationships and he add a wonderful spice to whatever people stew he finds himself in. He's always been that way. First to laugh, last to take offence. He's also a man who doesn't need much to be happy. He asks for little from people and is more comfortable, much more comfortable, with giving and doing rather than taking and receiving.

But ... today he needed.

And people gladly gave. It was remarkable to watch how people showed concern for him. How they understood why he'd be so upset. How they took time, the time he usually takes, to listen to what he had to say. I was pleased. Touched, even. By how people rallied around him.

I write often of the need for kindness, and sometimes I think I focus too much on the issue of disability in relationship to kindness. It's true isn't it that we all need, from time to time, the generosity that springs from a kind soul. We all need pull our chair up and sit to thaw at the heat that flows from a kind heart. WE all need to be caressed by the softness that warm blankets our shoulders which can only be found in kind words.

We.

All of us.

And today was Joe's turn to need.

And the world, and for this I will be thankful in prayer tonight, surrounded Joe with warmth.

Disability Pride

About The Blog's Name

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.